Noah Levi – Born December 2011
Our family welcomed Noah Levi on December 2011. He was born at 37 weeks weighing in at 7lbs 2oz and 18 1/2 inches long. We were expecting a healthy baby boy and all seemed well until his newborn evaluation when the nurses noticed a recessed jaw and a cleft palate. At the moment they just told us what they observed and took him off to the NICU. My husband felt like the floor had been pulled from underneath him; I sat a bit shocked and heartbroken that something was wrong with our baby.
The next 7 hours, I had nothing but faith that Noah was going to be okay and that we would be reunited soon. However, that didn’t happen and soon we got schooled on Pierre Robin Sequence and the concerns that followed. Noah had also already had his first surgery; the inflation of a collapsed lung due to is struggle to breath. Just fourteen hours old Noah was transferred to the Children’s Hospital of Philadelphia which was across the bridge from our New Jersey home.
At CHOP Noah was surrounded with Genetics, Plastics, and Pediatricians all poking, looking, and observing his condition. Luckily CHOP was very familiar with PRS. Noah would be at CHOP for exactly 31 days before being sent home. It was also concluded that Noah’s PRS was not genetic and he was cleared of other possible medical conditions he was at risk for. At a week old Noah successfully was breathing on his own so he need not to be intubated anymore. But a couple of days following Drs had decided to go for mandibular distraction to help with his feeding and breathing. At 12 days old Noah had mandibular distraction; surgery was successful though he was under sedation for another 4 days. He was able to breath on his own again and after a week and a half the feeding team began bottle feeding with the Habermann nipple. Noah was hungry and suffering from acid reflux. This made feeding horrendous. Nonetheless, thanks to a very special nurse Noah was introduced to the pigeon nipple and within days..he was on his way home.
Noah’s journey continues with a few bumps on the road. The most notable was that a week before his distraction removal surgery, his plastic surgeon realized that something was wrong. After lots of x-rays, it was concluded that his jaw had regressed! I felt like my world was ending yet again! Due to some mechanical malfunction, our poor Noah had to start the process of mandibular distraction all over all. In total Noah had his distractors in place for 18 weeks; 18 weeks filled with multiple infections and bandages.
Noah later had his cleft palate repaired on the eve of his 11th month. Surgery was successful and as of now he will not need any palate surgery. Our journey continues…
Today Noah is 15 months of energy and love. Our journey has been filled with ups and downs but we have made it through with the LORD by our side. We continue documenting his journey and development at noahprs.blogspot.com
I would like to thank all you amazing moms who are open about this journey. I have learned that we are all on the same path with different ups, downs, u-turns, and exits. However, your stories have been a support system for me and a great source of information for my moments of concerns. I’d also like to encourage anyone who needs help with a good team, the Children’s Hospital of Philadelphia here in the US is great.